Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blabbing To Everyone I Know


Robina

Recommended Posts

Robina Contributor

Before I went gluten free... my symptoms were so weird... and fierce... but now most seem to be manageable... the emotional aspect (and the anger I feel about this disease not being recognized the way it should be) has been the hardest for me to deal with... but basically I am talking about Celiac's with every person I meet... and in my profession... I meet new people every day... So I guess that's how I'm dealing with the emotional aspect...

On a similar yet different note... my brothers came up to visit today... and I talked with them for hours... explaining to them that the disease is hereditary... told them what my symptoms were... but also explained that the symptoms vary from person to person... and then I told them specifically how going gluten free has helped me (e.g. the symptoms that went away or greatly reducted)... I wanted them to realize that due to the fact that they also experience similar GI problems, etc... that they should be tested... especially since it's a simple test and then the dietary changes... one of my brother's decided he would forego the test and just try the diet for awhile (no medical insurance like me) while the other brother's wife gave me her email address and told me to send her the info on testing, etc... and the link to this board so she can force him to look into this further... lol...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Robina, I totally understand about babbling. I babble to everyone that will give me an ear. When we go out to dinner, my husband has to remind me to talk about something else LOL. I guess, even after being gluten-free for over 2 1/2 years, that I just don't want others to end up like I did. If my babbling helps a few people then it is worth it. So may your always talking about it help others.

kbtoyssni Contributor

I talk about it all the time, too. Not too much, but just enough so that most people I come in contact with on a daily basic coud define celiac and some of the major symptoms. I don't want to get annoying, but I think it's important that people are aware of the disease. A friend mentioned to me several years ago that she had celiac. I was curious about it so I looked it up at the time and then forgot about it. Years later I went on an elimination diet and realized wheat was a problem. I never would have made the jump to celiac if I hadn't heard about it several years before. And I'm sure I'd still be sick now because my doctors certainly weren't going to make the jump to celiac, either.

flagbabyds Collaborator

yeah i completely agree with the babling thing i talk about it ALL the time, especially when i am away from home at camp and such, the people i lived with at camp now all know so much about it it's pretty cool how many lives you can change with just talking about it.

emcmaster Collaborator

Hi Robina,

It is so tempting to talk about celiac to everyone you know and meet, isn't it? One thing I think we have to remember is that while we find it interesting, most other people don't. My husband has had to pull me aside (discreetly, of course) and let me know that I'm talking about it too much when he sees our friends' eyes glaze over.

It's human nature to talk about what is going on in your life with your friends and loved ones, and being gluten-free is a BIG part of our lives. I try very hard to gauge people's reactions to the short, simple answer I give for what celiac is. If they ask involved questions, I'll tell them a little more. If they ask questions that come off as them just trying to be polite, I say very little.

I guess I try to think of it the same way as someone who had cancer and was undergoing treatment. If someone asked them how things were going, they'd probably keep the medical terms to a minimum and just give an overview. I try to do the same thing because as interested as I am in my disease, I know 99% of my acquaintances are only being polite when they ask.

Just a little unsolicited advice. :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,709
    • Most Online (within 30 mins)
      7,748

    Mali
    Newest Member
    Mali
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Grahamsnaturalworld, It's never too late.   Have you been checked for Small Intestinal Bacterial Overgrowth?  SIBO can cause ongoing symptoms.  Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms.  The AIP diet can help with these by starving out SIBO bacteria and calming the immune system. Do you include dairy in your diet?  Casein in dairy can cause an autoimmune response the same as to gluten.  Have you been checked for lactose intolerance?  Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged.  AIP diet excludes dairy. Do you include grains in your diet?  Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms.  Some people with Celiac react to corn and oats.  The AIP diet excludes all grains.  Lectins in grains can be inflammatory and cause symptoms. Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant).  This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome.  The AIP diet excludes nightshades.   Are you on any medications?  Some medications can cause gastrointestinal symptoms.  Do you take any supplements?  Some herbal teas and supplements can cause digestive symptoms.  Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects. Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients can occur with continued symptoms.  Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms.  Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms.  Nutritional deficiencies can worsen over time as stores inside the body are depleted.   Have your doctors checked for all these?   I had a horrible time getting my symptoms under control.  I had to answer all these questions myself.  Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday. Interesting reading: AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review https://pubmed.ncbi.nlm.nih.gov/36137844/
    • Grahamsnaturalworld
      Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again.
    • trents
      Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
    • Jenny (AZ via TX)
      Thanks for the reply. I’ll call Colace to be sure.  I was just wondering if anyone had already gone through this:) I have not seen any gluten-free labeling on the package but I know that doesn’t mean it’s not gluten-free. The labeling is more of a comfort thing for me.  Do you think I need to worry about cross contamination if they say no gluten ingredients?  I’m so strict with being gluten-free but realize many manufacturers may have cya statements and the products are safe   Will look into Phillips as well. The surgeon recommended Colace and to add MiraLAX if needed so I actually need to get both as he says one of the worst things is to get constipated post surgery. 
    • QueenBorg
      Thanks for the information. I will definitely be doing a lot more investigating in the future!
×
×
  • Create New...